Saturday, October 6, 2018

Not Back to School

After 5 years of high school, Abby is finished school! We are relieved to be past much of the long, complex process of obtaining government funding for Abby to lead a meaningful adult life with the personal support she needs to help with her activities of daily living.

We've had a lot of people interested and confused about what happens next for Abby, so I here's my attempt to share the planning and the vision. September is always a time for back-to-school talk and most conversations about Abby have come down to the question, "Well, what is she doing now?" (It does make me feel for all the young people who don't have a solid, detailed life plan went leaving school.)

I've been interested lately in the connection between culture and language. I think one reasons we find it hard to conceptualize Abby's life for people is that we haven't yet become accustomed to the language of self-determination for individuals with complex disabilities. 

The Ontario Independent Facilitation Network has some really helpful information on the context for self-determination and the concept of person-directed planning: "People with developmental disabilities and their families needed to be able to think and plan beyond the limits and boundaries of congregated services and programs that have historically been developed."

We live in a time where most large institutions for individuals with developmental disabilities have been closed and there is more choice about models for living in the community, but there are still thousands of adults waiting for funding and living in sub-optimal conditions. Among the choices, individuals and families can still opt for congregated day programs, if space and funding is available, but we wanted to explore more for Abby and we wanted the choices and decisions to be hers.

Several months ago, we hired an independent facilitator to help with Abby's dreaming and planning. Part of the process was to help Abby realize she was allowed to dream and ask for the moon and we would do what we could to support her dreams and goals.

With the help of a facilitator, we invited people from a variety of aspects of Abby's life to come together in a Circle of Care for some facilitated brainstorming about what Abby loves to do and what we love about Abby and what gifts Abby has to share with the world.

Abby has a lot of wonderful people in her circle! We came up with an incredibly long list of ideas and themes. Abby mostly just listened and giggled and enjoyed eating Skittles with us. Her work came next.

We took the ideas and made them into phrases to help organize Abby's thoughts. Then I created a "page" on her Tobii (speech-generating device) with the key words and symbols. When she selected a symbol, the phrase would be spoken. So, for example, when she selected "Rotaract Club", she would hear, "The Rotaract Club is a group of young people who get together to exchange ideas and have fun by helping others." Then, Abby spent time exploring the selections and learning more about them and thinking about what she'd love to do. It was important to allow her the time to think about her choices. 

Eventually, we asked Abby to make some decisions and narrow down her choices, all the while explaining that she was not committing herself to one plan for life. She was just choosing what to explore first.

Here are some of Abby's initial goals:
  • Literacy and Communication - continuing education on the reading, writing and software programs (She has been researching the candidates for the municipal election and reading Harry Potter and "Out of My Mind".
  • Accessibility Reviews - shopping and documenting opinions on accessibility, potential partnership with Stratford Tourism (She has been studying accessibility issues, has visited the museum to take photos for her first accessibility review and booked her first gig for school workshops about accessibility at the end of October.)
  • “Out of My Mind” workshops for Gr. 4-8 - read and prepare activities and questions to teach children about disabilities 
  • Active Living - swimming and walking, physio stretches
  • Entertainment and Leisure - Rotaract, Ellen, social media, art galleries, car shows, wheelchair hiking
  • Facilitated Art - partner with senior citizen to create art together in partnership with Gallery Stratford

A big theme that emerged was teaching. Abby loves teaching. She has many opportunities to raise awareness and teach others what she's learned. Some of her goals will provide motivation to keep working on her reading, writing and communication with the Tobii. She loves the idea of being a key note speaker or a guest on Ellen some day.

When helping Abby to apply for a Youth in Action grant this week, we had to come up with a title for her, so we wrote "Independent Accessibility Advocate". Maybe I'll use that the next time someone asks what Abby does. 

Tuesday, September 18, 2018

2018 Run4Rett

Thank you to everyone who supported Team Abby at the Run4Rett this year! It was a hot, hot day on Sept. 16th and we appreciate the efforts of those who completed the 1km and 5km routes! Abby was thrilled to be pushed her in wheelchair this year by her very fast brother! They were the first ones to finish. She then spent most of the time walking around and visiting with friends and family. She was feeling great and was all smiles despite the heat.

This year, our team raised $6,541 and the totals for the whole event were over $60,000!! We are also deeply grateful for the many generous sponsors who made donations to the Ontario Rett Syndrome Association in support of Team Abby! We were able to see several of the individuals with Rett syndrome and their families from across Ontario, as well as some of the scientists who study Rett syndrome in Toronto. Dr. Eubanks gave us an update about the upcoming clinical trial for Rett syndrome and we are hopeful that there will soon be a treatment to alleviate some of the symptoms.

Thanks to Team Abby and supporters! Stay tuned for updates about Abby's life after school.

Thursday, August 30, 2018


Abby's maternal grandfather died this summer from complications due to dementia.

Abby was one of Grandpa's biggest fans. She had a special place in Grandpa's heart and he showed great concern for her well being. He was a devoted supporter of Team Abby and was always hopeful for better days ahead for her. I remember once he said, "I hope Abby will be able to talk during my lifetime."

Grandpa's favourite photo of the two of them
As his dementia progressed, Abby and Grandpa began to have more in common. They each had a different neurological condition and they both required 24/7 care. For a long while, I was able to take the two of them out together for walks, Grandpa helping by pushing Abby's wheelchair and Abby helping by providing her chair as a steady mobility device to support him. More than anything else, he wanted to be helpful and to take care of his family. They were two peas in a pod. They absolutely loved spending time together!

Grandpa insisted I take a photo of the two of them by the flowers.

Grandpa's concern for Abby would sometimes cause him distress. He wanted to make sure she was okay and he was always happier when he could see that she was. Even when he eventually forgot her name, he picked up on the cues that she was dependent and needed extra care. Until one day during the last month of his life, that is.

Grandpa would often come over to our house for some therapeutic time with our cat and dog. He would sit and pat the cat and talk to it. Every few minutes, he'd ask one of us, "Where's Audrey?" (his wife) or expressed related concerns. On this day, about a month before he died, Abby was sitting across the room from him and I had stepped out. I heard him asking her the questions and talking to her directly as if he'd forgotten that she couldn't speak. He was seeking reassurance from her, saying, "I'm worried. I don't know what's wrong." She had her Tobii (AAC/ speech-generating device) in front of her and she was responding in her developing way of putting core words together: "want. it. good. have." To most people, it's hard to decipher, but she was trying to reassure him.

So, later that day, I added a phrase button that said, "It's okay, Grandpa" and modelled for her to show her where it was and gave her some time to practise for next time he visited. This is what she came up with the first try, completely independently:

It's okay, Grandpa.
I know it.
(Then she turned the volume up.)
I love you.

She'd been wanting to take care of Grandpa for years and she finally found her voice and her chance to be his caregiver.

She used that phrase quite a bit during the following days, when he came over, when she wanted to go visit him in the hospital, when she wanted to ask how he was doing, when she visited him during his last days, when she wanted to say how much she misses him.

We all miss him and we were so very thankful for the memorial donations made to the Ontario Rett Syndrome Association in his memory. He would be so pleased. And his wish did come true.  She was able to talk during his lifetime. When he really needed her.

Grandpa, Abby, Mom at Run4Rett 2008ish

For those who are interested:
Join us for the Run4Rett on Sept. 16th.
Sponsor Team Abby.